This may be 'old news' for many of you, but it's new to me. My husband is always coming home with a treatment idea or drug that someone told him about. Today it's Ambrotose, a glyconutrient. Anyone had an experience with that particular drug or have info on glyconutrients and Lupus in general? I'm sure I've seen references to them on the board, but can't find them now. Any info would be appreciated. There's a lot on the Internet, but sometimes it's hard to sort out the good info from the 'hype.'
Here is a link where Susie gave me a good response about glyconutrients:
I have not actually tried them, or heard any results, but it does seem a bit of a snake oil versus a real cure. I would love to hear testimony from someone who has tried them. I also did a google search, and came across this DR talking about Abrotrose and the company, Mannatech, that makes it. Here is that link:
It talks more about cancer, but will give a good jumping off point of looking at research studies that are actually relevant.
Good luck and let us know what you find out.
Thanks, Brent. I'm doing more research and if I find anything interesting, I'll post it.
I had posted about this in a Lauri's Lounge post about glyconutrients, so I just cut and posted my earlier response to Nicca.
My best advice about glyconutrients is save your money - this is basically a multi-level marketing scam designed to capitalize on people's interest in natural health products.
Glyconutrients are basically plant sugars (saccarides) that your body uses to form substances called glycoproteins. But unless you have a very rare enzyme deficiency, your body can synthesize the saccarides it needs from your normal food intake.
There is some legitimate medical research going on about the role of polysaccarides in cancer growth, but the research is in its early stages and still years away from concrete results.
The company that started the glyconutrient buzz is called Mannatech, basically a multi-level marketing scheme- they are currently being investigated by the Federal Trade Commission and the SEC for fraudulent health claims; there are several class action lawsuits pending in the United States, Canada and Australia.
Many of the "medical experts" who write books about these products are actually paid employees of the companies that make them. Although there are many excellent alternative and complementary health products out there, there are just as many health frauds and scams. You have to remember that under federal law, most of these products are considered "dietary supplements" and they are not tested, regulated or monitored by the Food and Drug Administration. So unless a company claims that its products actually "cure" a disease, they can say pretty much anything they want to about it. Usually, the FDA gets involved only when someone dies or is seriously injured by the product. The Federal Trade Commission is the agency responsible for investigating fraudulent or deceptive claims made by these companies, but they are overwhelmed by the sheer number of products on the market, so they generally don't get involved until someone files a complaint about that product.
The FDA has a series of articles on how to recognize health frauds, and you can also check for information on websites like quackwatch that monitor health frauds. But the best defense is your own common sense - any product that sounds too good to be true usually is. And no one product can cure every disease, so a "one product cures everything" or "miracle cure" should set off the warning bells.
Other people who have actually used these products have also posted warning that it's an expensive rip-off. So save your $250! :)